Chronic pain condition 10 times more likely for those with EDS, per study
US insurance data show link to CRPS, typically affecting arms and legs
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People with Ehlers-Danlos syndrome (EDS) are more likely than others to also be diagnosed with a rare and often severe chronic pain condition that usually affects the arms and legs, according to a new U.S. study.
In a review of insurance data, researchers in New York found that complex regional pain syndrome (CRPS), a specific type of chronic pain, is more often diagnosed among EDS patients than in individuals without this group of connective tissue diseases. In fact, people with EDS were shown to have a more than 10 times greater likelihood of also being diagnosed with CRPS, the data showed.
While this association suggests potential overlap between the biology of the two conditions, the precise relationship remains unclear, the researchers noted.
Still, “these findings highlight the importance of greater clinical awareness for diagnosing CRPS in patients with EDS and advocate for further research into the underlying mechanisms and prevention strategies,” the team wrote.
The study, “Association between Ehlers-Danlos syndrome and complex regional pain syndrome: a large nationwide claims database study,” was published in the journal Regional Anesthesia & Pain Medicine.
EDS is a group of genetic disorders that affect connective tissue throughout the body, which supports the structure of the skin, joints, blood vessels, and organs. Marked by symptoms such as stretchy and fragile skin and overly mobile joints, or hypermobility, these conditions can cause chronic pain for patients.
CRPS, typically affecting a person’s limbs after an injury, surgery, or other traumatic event, may overlap with EDS. Among CRPS patients, pain becomes long-lasting and out of proportion to the original injury. It’s an unusual condition and one that’s sometimes difficult to diagnose.
Individual cases have suggested a link
Previous case studies have suggested a possible link between EDS and CRPS. However, there haven’t been large studies to confirm or reject this association.
“Given the rarity of both conditions and their substantial diagnostic challenges, clarifying whether EDS is associated with a higher proportion of CRPS diagnoses could improve clinical awareness and early recognition of disproportionate [post-surgery] or post-traumatic pain in patients with connective tissue disorders,” the researchers wrote.
To learn more, a team from institutions in New York City analyzed 2017-2022 data from MarketScan, a large database of private insurance claims in the U.S. Across more than 54 million people, the researchers found that 0.05% — slightly more than 26,000 patients — had EDS. A total of 0.09%, or about 51,000 people, had CRPS.
Altogether, 490 individuals had both conditions, and in 273 of them (56%), the CRPS diagnosis came after that of EDS.
These findings provide the first large-scale population-based evidence consistent with prior case series suggesting a diagnostic co-occurrence between EDS and CRPS.
According to the researchers, compared with people without an EDS diagnosis, those with connective tissue disease had a nearly 11 times higher chance of later receiving a CRPS diagnosis.
“These findings provide the first large-scale population-based evidence consistent with prior case series suggesting a diagnostic co-occurrence between EDS and CRPS,” the team wrote.
Demographically, the group of people with EDS and CRPS was largely similar to the group with EDS alone. Both were predominantly comprised of females and had a median age of 27. However, significant age differences emerged between people with EDS and CRPS and those with CRPS alone. Those with the pain disorder had a median age of 48.
“This finding indicates that CRPS is documented at an earlier age in patients with EDS, but does not necessarily reflect earlier disease onset,” the researchers wrote. For example, people with EDS may have more contact with the healthcare system. This could increase the likelihood that they receive a CRPS diagnosis earlier in life.
Alternatively, “awareness of an existing EDS diagnosis may increase the likelihood of documenting CRPS, whereas CRPS may be underrecognized in patients without EDS,” the team wrote.
US database large but not deep
The population-level information from the MarketScan database allowed the researchers to explore records from a large group of patients across the U.S. While this broadened the scope of the study, the researchers also noted several disadvantages.
With the available data, the team could not confirm either diagnosis or access more specific medical information. The researchers also couldn’t explore potential biological or mechanistic links that could explain the overlap between the conditions.
In the vast majority of EDS cases (87%), the insurance data didn’t specify the EDS type. That limited the analysis, so the team was unable to ascertain whether people with certain types are more likely to also develop CRPS.
In addition, while the database sample is large, it may not accurately represent the U.S. population as a whole, the researchers noted.
“MarketScan is limited to commercially insured populations and underrepresents individuals with public insurance (Medicare, Medicaid) or limited access to healthcare,” the team wrote.
Further studies are therefore needed to confirm and elaborate on the associations between EDS and CRPS, the researchers say. This could help people with EDS and their doctors better understand when to suspect CRPS, potentially improving diagnosis.
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